Old 05-03-2016, 09:48 PM #1 (permalink)
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Default Familial ALS? Scared from symptoms.

Hello, I'm a 35 yr old female. My dad was diagnosed with ALS when he was 33 - and he passed away at 36. My dad had a cousin who also died of ALS, but I know nothing beyond that.
I've recently seen a neurologist, due to being referred to one by an Ortho doc, after some strange symptoms. I'm scared, and hope just for some feedback. It's difficult to type with my right hand already. I wouldn't be posting on here and be so concerned, except that I have two right-hand fingers that are curled and weak, and won't go straight unless I manually straighten them with my left hand.
Please read my timeline of symptoms - the newest symptoms from today seem to say "NOT ALS" - so maybe it is just a different MND/neuro problem?? any feedback is appreciated.

-------------------
Fall/Nov 2015 - Noticed weakness in hands, generalized, right hand definitely- difficult to open pill bottles. Suspected CTS due to being pregnant.

March 2 2016: Noticed weakness in my Right hand, more pronounced. (I am 1 week after having a baby). Watched in mirror while doing morning face routine, noticed R index finger curls inward, difficult to straighten. Pinpointed weakness to R index finger & thumb. Noticed right thumb bent sideways, wasn't like that before; thumb is almost stuck being bent. Difficult to straighten index, & especially thumb. Weakness with supporting baby's head, getting myself dressed, getting babys clothes & diapers done w/right hand, difficulty with turning keys, holding utensils, with writing. Have been using other fingers or left hand instead. There's been NO pain. No tingling or numbness. Wondering if it's still CTS.

April 13-16, 2016 Noticed fine tremors in right hand and all right fingers except middle finger.

April 15, 2016 . Saw orthopedic doctor. RO Cts. Was referred to neurologist.

April 18, 2016 Numbness/pain in RIGHT forearm. Numbness starts from where baby laying head, now today it is not going away and is more bothersome. Pain is intermittent- a 1 or 2 on pain scale.

April 26, 2016 Have noticed forearm numbness is not constant anymore, not so bothersome. It still comes on as dull-numbness when baby lays head on right arm. A new thing started - since April 24 have noticed muscle twitching in back of upper right arm (triceps). Twitching comes and goes during the day/night. it's annoying but not painful.

4/29/16 - neurologist appointment:
Neurologist wants me to get an MRI of head & neck. Scheduled for May 5. He doesn’t want an EMG at this time, he doesn’t think this is related to what an EMG would find – he said maybe later. (Of course the fine tremors in hand were not there anymore).
From Neuro exam: Positive /present Babinski sign. Confirmed there is weakness on right upper extremity, says right fingers are curling due to muscle/nerve issue. Probable Upper Motor Neuron Lesion at some point. he thinks I've been compensating for some damage from earlier in my life - I have hyperreflexia (have had it since childhood), & clonus. Says there is slight left upper extremity weakness.

5/3/16:
All above symptoms continue. Have continued to notice twitching in both upper arms. Today and last night noticed cramping/pain in BOTH hands and wrists. Almost like a BURNING sensation at times. Right arm is hurting up and down it - mostly feels like burning or cramping. Would rate it a 4 out of 10 at worst times though; it is tolerable. Feeling numbness in R forearm and R fingers. Today had a muscle cramp in right forearm - like a charley horse! Also had this happen a couple of days before by Neuro appt (happened approx 4/27/16). I can still hold my baby, but my discomfort is increasing.
Also concerning me, just today, is an intense, almost electrical pain, in my left buttock - near the middle of my butt, but on the Left side, near end of my tail bone. It happens sporadically all day, started about 11am, has increased in how much it happens as day goes on. I don't know if this is related to the other things.

Thank you for any feedback.
- Mel
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Old 05-04-2016, 12:25 AM #2 (permalink)
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Default Re: Familial ALS? Scared from symptoms.

I agree with your doctor. Doesn't say ALS to me.
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Old 05-04-2016, 07:05 AM #3 (permalink)
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Default Re: Familial ALS? Scared from symptoms.

I agree there are somethings that do not sound like MND though some things do and your family history is concerning. Your neuro is taking the right path looking elsewhere first. I completely understand your worry- I would be worried too. Please keep us updated on what happens.
Curious, what happened to the relevant parents of the people with ALS? If this is FALS then they must have had the genetic defect and received it from one of their parents. Did any die early or have another neuro disease?
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Old 05-16-2016, 10:51 AM #4 (permalink)
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Default Re: Familial ALS? Scared from symptoms.

It's been a little time since I first posted, and my concern has remained. I probably over-reacted with my symptoms; because the pain I was having in my back/buttocks pain went away after one day. The condition of my right hand is a constant, I have two fingers that are weak and have been abnormal for several months now. I am continuing to experience weakness, and have to use my left hand for several tasks now, especially while I'm back at work as a nurse. I can no longer manipulate a syringe with my right hand to draw out medicine. I can't turn keys in an ignition. It is difficult to write, and to use a fork, etc. I'm attaching pictures of my hands, to note the difference between the two - my right hand fingers will not go straight anymore, except the middle finger (of course).

I did have an MRI done after first seeing my Neuro doctor. There are no problems with my brain or spine, he says MS is ruled out. He is referring me to see a Muscular-Neuro doctor, but the wait can be months to get an appointment, so now I'm stuck waiting to hear back.

My mom is contacting my father's living aunt, to try and find out more about who had ALS in the family. My mom told me that she knows he had a first-cousin with ALS... so I'm concerned if it's FALS.

I'll keep the post updated when I find out more. thanks for the responses.
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Familial ALS? Scared from symptoms.-img_2041.jpg   Familial ALS? Scared from symptoms.-img_2045.jpg   Familial ALS? Scared from symptoms.-img_2048.jpg   Familial ALS? Scared from symptoms.-img_2046.jpg  
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Old 06-13-2016, 09:58 PM #5 (permalink)
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Default EMG upcoming

Hello... I'm having a huge mixture of feelings; about a possible diagnosis of ALS (actually it'd be FALS). I originally posted on here with numerous symptoms I felt I was having (some bouts of numbness right arm, etc); but I really think I was over-reacting to every single sensation... Bottom line - I have clinical weakness on the right arm and hand; and my neurologists and PT/OT think I have weakness in my right leg and left arm as well (I definitely agree with them about left arm).

I'm now considered "pre-FALS", because things aren't looking good. I have atrophy in my right hand, loss of fine motor in my right fingers; loss of strength in right arm; muscle twitches in both arms. The Pt/Ot therapists already did strength tests, and say my right arm and hand are 50% weaker than my left side (I'm right-handed). All the other neuro assessment was pointing to upper motor neuron problems. I have an EMG scheduled June 23, and the neurologist is going over test conclusions on June 29. MRI was already done (of head and neck), which was normal. I haven't heard anything back on all the blood work/labs they took last week. I've seen two different muscular neurologists, who specialize in ALS, and both are finding the same things. They don't want to give a diagnosis yet, but say if it's not ALS, it's an upper motor neuron disease for sure; one of the neurologists thought if not FALS, then possibly Hereditary spastic paraplegia...

I'm freaking out. I have a 4-month year old baby that I'm starting to have difficulty holding and taking care of.. I'm only 35. My dad was 36 when he died from ALS. I'm glad I've found this forum... I just have so many difficult emotions right now, waiting to find out what a diagnosis is. My work has already put me "off duty" as of last week; due to the fact that I'm a nurse who works with children - my type of work included a lot of lifting, and they took me off duty for now, due to safety issues. It's very difficult waiting to see what will happen. My greatest wish is that everything would reverse and I could go back to normal, but I feel deep down that isn't going to happen.
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Old 06-13-2016, 10:12 PM #6 (permalink)
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Default Re: EMG upcoming

Mel I am sorry things are trending this way and wish you the best. If it is get gene tested ASAP ( I believe there is no identified gene for your family yet?). There are sod1 trials right now recruiting. As you doubtless know sod1 is the second leading cause of FALS. If I were sod1 I would travel for that trial
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Old 06-13-2016, 10:20 PM #7 (permalink)
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Default Re: Familial ALS? Scared from symptoms.

Having a first cousin with ALS doesn't quite make the cut for fALS.
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Old 06-14-2016, 09:59 PM #8 (permalink)
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Default Re: Familial ALS? Scared from symptoms.

My dad had ALS, his first cousin had it, & two other relatives on my dads side had it (I am trying to establish the exact connection.. I only have a letter from my dads aunt, with names of who died from ALS). My neuro dr's are indicating the genetic testing to be done as next steps.
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Old 06-14-2016, 10:04 PM #9 (permalink)
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Default Re: Familial ALS? Scared from symptoms.

Ok. You convinced me. 8^]
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